Above: Tracy Hutchinson-Wallace photographed at her home. Make-up by Shenelle Escayg. Photo by Mark Lyndersay.
“You are so brave, courageous, strong!”
“I could never do what you are doing.”
“The Lord has a plan, would never give you more than you could carry.”
And my personal favourite, “My thoughts and prayers are with you.”
All reactions to the news that … I advocate for disabled people.
Ah, ah, ah. I bet you thought I was going to say the other thing, right? Psyche! But seriously, if there’s one thing that has become clear on this journey, it’s that there are far too many similarities between the two situations.
And that people generally react to both in the same way. Like there’s this grand tragedy that an ineffable God has decided to play out in our lives. A drama that no amount of positive thinking is going to change. And yet, knowing that, why does almost everyone who feels helpless in the face of those situations choose to go down the road of “Let me say something or other so that I can make myself feel better.”
Look, understand me – sometimes the platitudes are small comfort, especially for the terminal illness bit. For a couple of seconds, I don’t feel entirely so alone. But most of the time, after the first few seconds, I have to viscerally hold myself back from saying what I really think – which is “Can’t take that to Chin Shop.”
Clichés. Just. Don’t. Cut It. It’s not a popular truth. But to me, it is the truth.
Folks need to admit to themselves that those easy-to say phrases are not meant to make us, the disabled, the chronically or terminally ill, the parents and caregivers, feel better. They make YOU feel better. You feel as if you are DOING SOMETHING when in reality, you are … not doing much of anything at all. It is a broad farce that we are all better off not participating in.
Dealing with death, particularly the grief that comes with it, is difficult for loved ones and family and friends. But it’s heartbreakingly challenging for the person involved.
“Faith without good works is dead.” That’s a better mantra to follow when reacting to disability or death. Tangible help, practical assistance, sensible support – that’s what parents and caregivers and chronically ill people need. The next time you feel moved to offer thoughts and prayers or other common-or-garden phrases, consider these suggestions instead. Real words from real people…
“How can I help keep the boys occupied this weekend?”
“Let me get the next round of market vegetables for you.”
“How about I scan all your medical records and organise your digital folder so that You have all your information to hand during medical consults?”
“When is your next doctor’s visit? First, let’s book some time for you to talk me through your questions, and then I’m coming with you on the day to take notes.”
Yes, dealing with death, particularly the grief that comes with it, is difficult for loved ones and family and friends. But, more importantly, it’s heartbreakingly challenging for the person involved. We don’t need the extra emotional burdens. Every spare minute of time or ounce of energy or quantum of will is for fighting our fight.
And as innocuous as they seem, reacting to those tired phrases and memes is often an unnecessary distraction, robbing everyone of valuable time and energy better spent in concrete support.
Tracy Hutchinson-Wallace is the mother of an Autistic teenaged son, the other half of the online support duo – Autism Spirit and is currently making as many memories as she can with her two sons as she battles cancer.
Add comment